The Cost of Fear for Pediatric Neurologic Care

NeuroDevelopments: A Historical Lens on Child Neurology

This is part of a monthly editorial series discussing current issues affecting children and their caregivers with thoughtful consideration of the history of pediatric medicine. If you are interested in contributing, please reach out to the editor of this journal.

In child neurology, many emergencies are obvious. When we are on call, a child arriving in the emergency room in status epilepticus or with a new stroke activates clear protocols.^1,2 Teams assemble with our monitors, medications, tubes, lines—each person with their critical role. We can go home with a moral clarity that we did our very best to treat the patient and give them the best possible outcome.

Some emergencies, though, are less obvious and the path for their treatment less clear. Throughout the United States, some children with neurologic emergencies are from families who no longer feel safe to bring them to the hospital or trust medical professionals.^3–5 This may be related to concerns about physical safety of caregivers or family members with Immigration and Customs Enforcements raids, or about their ability to pay for services with insurance disruptions.^6–9 The child with epilepsy may die from Sudden Unexpected Death in Epilepsy (SUDEP) after parents cannot access seizure medications, afraid to leave the home. ¹⁰ The child with flu encephalitis whose families did not trust their doctor about the safety of vaccines might arrive too late to be saved.^11,12 Other children with seizures, severe migraine, or chronic neurologic conditions may not die, but may suffer unnecessarily and experience increased disability through inability to access timely care.^13,14 For the emergency of family fear and mistrust, there are no protocols and less moral clarity. The consequences, though, for the children are the same.

This is on a background of persistent, pernicious, long-standing inequity, of course—on almost any dimension that we can examine.^8,15 Children in rural areas have a harder time accessing specialist care, likely leading to delayed diagnosis and treatment.^16–18 Children with public insurance are less likely to receive standard of care for infantile spasms. ¹⁹ Black and Latino/e children are less likely to have timely epilepsy surgery.^20,21 Babies who have seizures and come from families who use languages other than English are more likely to have poor neurodevelopmental outcomes. ²² Children, even citizens, with increased exposure to deportation enforcement are at higher risk of suicide and mental health conditions.^23–27 These inequities and delays have long-term and unfair impacts on these children. This tragedy is compounded by the reality that in these cases, we know the right thing to do, it just does not get done.

Layered onto these structural inequities is the cumulative burden of adverse childhood experiences (ACEs). Exposure to violence, household instability, caregiver mental illness, food or housing insecurity, and chronic stress is not separate from, but deeply intertwined with, neurologic health.^28–30 A growing body of evidence demonstrates that toxic stress in early life can alter brain development, disrupt neural networks, and increase the risk of seizures, developmental delays, and mental health comorbidities.^28,31,32 For the children we care for, ACEs are not abstract risk factors. They shape whether a caregiver can adhere to a treatment plan, whether a child can sleep safely, whether medications are taken consistently, and whether follow-up is even possible. In many cases, the same systems that produce inequities in access to care also perpetuate the environments that give rise to ACEs. The result is a compounding effect, where biologic vulnerability and social adversity reinforce one another, widening the gap in outcomes for the children who are already most at risk.

If we recognize these as emergencies, then the responsibility sits squarely with us, both as individual child neurologists and as a profession. At the bedside, this means choosing to ask about barriers to care, considering the impact of social needs and ACEs on our patients, ensuring language-concordant communication, and adapting our plans to the realities families face. It means not accepting missed visits or medication gaps as inevitable, but as signals that demand our attention and response. It means developing locally informed protocols for when needs do arise.

Beyond individual encounters, it requires us as a profession to use our collective voice to advocate for policies that allow families to seek care without fear, to build systems that support equitable access, and to train the next generation to see these inequities as part of their clinical responsibility. ³³

We are accustomed to acting decisively in moments of neurologic crisis. We must bring that same urgency, accountability, and moral clarity to the less visible emergencies that shape our patients’ lives and outcomes.